Thursday, January 1, 2015

2014 Ends a Six Year Stretch!

What a great year!  We were very busy with 27 doctors appointments between Cole and Reagan plus 110 occupational/physical therapy appointments and 18 therapy appointments at UVA in August.  We are very excited to also have broken a six year stretch of hospitalizations.  Johnny's serious car accident/broken in 2008, Reagan's brain surgery in 2009, Danielle on bed rest, Cole and Kendall in 2010, Cole again twice in 2011 for not breathing, Reagan in 2012 with the return of seizures, and Cole again in 2013 with concerns of a shunt failure.

Even though we did end up in Urgent Care this year with several stitches on Cole's chin, we don't count that since it wasn't an overnight at a hotel.  We are considering this trend to be broken and look forward to another year of health in 2015!

The kids had a very fun Christmas.  All Reagan asked Santa for was a Leash Pup, Flutterbye and a Paw Patrol stuffed pup named Skye.  Cole asked Santa for "a Matchbox car…just one."  He was very excited about getting the Transformer Rescue Bots Chase and Heatwave and the flatbed/Jeep even though they weren't on the list.  The kids were also excited that their Dad took off two weeks from work!  It was so nice having him home!

After Christmas we surprised the kids with a trip to Hershey, Pa.  We took them to Sweet Lights which is a two mile drive through the woods to look at Christmas lights.  Then we headed to a Hershey Bears hockey game and back to the Hershey Lodge.  The kids were super excited about being at a hotel and we even made time for a quick swim at the pool.  The visit in the hotel lobby from a large stuffed Recesses Cup and chocolate chip cookies and milk on our pillow were icing on the cake!

On the second day of our vacation we took the kids to Hershey's Chocolate World to see how chocolate was made.  Reagan decided her favorite part of the entire trip was this ride through the story and especially the singing cows with hair bows explaining about the milk used in making chocolate.

After a visit to Chocolate World we spent the day at Hershey Park.  I had taken the kids twice over the summer and although they both had fun, Cole was apprehensive about some of the rides.  Well that hesitation was COMPLETELY gone.  He was so excited to run after Reagan onto every ride.  We spent the entire day at the park and they slept the whole way home!

Johnny was at the fire house for New Years Eve but the kids and I had a low key New Year's Eve at home with the Coullahan's and Golino's.  We did have a new record though - the kids stayed up until 11pm!  Perhaps next year we'll actually make it to see the live ball drop instead of the "staged" one.  But honestly, the kids are just as excited about the advanced show and don't really know the difference yet.

As we look into 2015 we are excited about all that may lie ahead and we are excited about seeing where our adventures take us.  We currently have 12 doctor appointments on the calendar, continued weekly OT for both kids and bi-weekly PT for Reagan in addition to a change in our medical insurance.   I'm sure this means numerous letters of medical necessity to the medical review board and proof of continued therapy requirements.  This year will also require a move from our beloved program at UVA's Children's Hospital to new program.  We hope to find another intensive summer therapy program that is a good fit.  Kennedy Krieger is our top pick but are still working through the details of how to make the schedule work. Secretly I am also hopeful that 2015 is the year we are able to discontinue Reagan's brace.  Time will tell, but we are hopeful this may be in our near future.

Thank you for continuing to follow our journey and we look forward to sharing our adventures next year!

Tuesday, November 18, 2014

From the Minds of Children….

I can't believe it's almost Thanksgiving!  Where does time go?!  We recently took Cole's 4 year and family pictures.  It has taken until just recently to have two children who cooperate for pictures and I can't tell you how exciting that is!  It makes pictures must more fun and a LOT less stressful.  Unfortunately I can't share ALL my favorite pictures yet because I don't want to spoil our Christmas card but here are a few!

I have two quick updates on doctors' appointments.  Reagan and I went back to see Shawn at Nascott Orthotics and Prosthetics and had him modify her brace according the physiatrists orders and physical therapist's suggestions.  The toe plate was cut down and the sides were trimmed down.  Not only does it not hurt to go on anymore, but Reagan can do it by herself!  WIN - WIN !  We definitely see this brace as a stepping stone toward not having a brace, but we are going to remain cautiously optimistic for now.

Cole was also able to FINALLY get in to see a Developmental Pediatrician.  After 4 phone calls and 6 months of waiting someone finally called back and offered an appointment two days later!  We saw Dr. Calbert from Children's National Medical Center and I really liked her approach.  She asked a LOT of questions and completed a few evaluations with Cole.  I think my favorite was when she asked what the picture of a lower case t was and he said, "That's a cross, it's where Jesus hangs."

Unfortunately after 2 weeks of constipation and Mirilax every other day for 10 days the medicine started working during the appointment and he was very uncomfortable and crying most for most of it.  Can't blame the poor kid!  We talked for a long time and I provided a family history.  Unfortunately she said he shows all the classic signs of ADHD.  She provided some recommendations for how to work with him and asked that we come back in 4-6 months.   Dr. Calbert's office books out 6 months and unfortunately there were no available appointments.  I was told they are working to clear her schedule since they hired a new doctor and recommended I call back next week.  Let's hope we can get back in to see her!

I find my feelings about this diagnosis very interesting….so much like my response to seizures before I had a child with them.  I would think, "they don't hurt you so what's the big deal?" Or glasses, "everyone has glasses, so what?"  But until you face the reality of how it changes your life you don't really look past the surface. So many kids are diagnosed with ADHD that it feels somewhat "normal," but as a mom, I realize this means he will face more struggles in learning than most kids…on top of the other challenges that he is already facing.  And although we will take this head on like everything else, it does kinda make me say, "Seriously? More? Enough is enough." So I will be doing some research and talking to people who know people and get as many recommendations as we can.  Luckily these waters have been charted by many before us so there will be guidance and understanding that we don't necessarily have with some of the other challenges.

Luckily we don't have another scheduled doctor's appointment until February!  Wow, it feels like a vacation!  So given I don't have THAT to write about, and given the kids have been cracking me up lately with their wit, I decided to start sharing some of the witty comments.  Here are a few to catch us up….

Cole recently asked if I would play "the me song".  I was slightly confused and he pointed to his penguin from Build-A-Bear that we got last Christmas that plays Frosty the Snowman.  He proceeded to sing, "Frosty the Snowman was a jolly happy soul.  With a corn cob pipe and a button nose and two eyes made out of ME!"

Cole was recently invited to a birthday party for a classmate.  A pregnant mom looked at him and said, "Well you are sure a big boy."  And Cole responded, "Not as big as you!"  Luckily he gave her a big smile of approval and she wasn't offended.

Cole and Reagan recently had Crazy Hair Day at school to raise awareness for childhood cancer.  He chose to wear one of Reagan's tutus on his head upside down.  When he got off the bus (4.5 hours later) he was wearing the tutu and I laughed and said, "Are you still wearing that?" To which he responded, "Are you still wearing THAT?"

Reagan begged to have an allowance and we told her she needed to earn money just like mommy and daddy have to do so now she has chores that she is expected to do at home. So we talked about options and she is required to make her bed, clean her room and clean the leaves that have dropped from the tree in the family room (starting light).  Last Friday she asked for her allowance and I told her she needed to clean up the leaves before I would give her the allowance.  She told me she didn't feel like it so I told her she wouldn't be getting her allowance.  The next day as we got ready to go to the store she asked for her allowance so she could buy something. I reminded her that she wouldn't be getting it since she didn't do all her chores.  When she said she would do it now I told her I had already cleaned up the leaves so it was too late.  She looked at me rather annoyed, went to get the broom and dust pan, walked over to the tree, shook it and proceeded to clean up the new leaves that fell.  After dumping the leaves in the trash and hanging up the broom she asked if she could have her allowance.  After feeling rather conflicted as to whether I should encourage this procrastination I decided her creativity in creating work and therefore creating money was rather ingenious and I gave it to her.  However, I think this will probably only work once :-)

More to come I'm sure!

Wednesday, October 22, 2014

Cole Turns Four and Reagan Rides in Show #2!

Wow, it has been a busy month.  Our little Ironman turned four on October 6th and we celebrated with his friends and cousins at the Dulles Sportsplex with a soccer party.  He had a great time with Coach Marie learning new soccer moves and playing on the moon bounce.  Cole's favorite toys this year were Optimus Prime (Transformers) and his new planet book from Grandma.  After just a week he has memorized all the planets in order from the sun!

We also went to my parent's to light a lantern for Kendall.  Each year the kids ask more questions about it.  And although they have a lot of fun lighting the lantern and watching it rise to our angel in Heaven, it's always hard to explain the raw emotions that we still feel in our hearts.  For the kids, it's a fun activity because they don't feel the pain and loss that we feel.  So for now we give them lots of hugs and thank God that they are both part of our lives here on Earth.

October was also filled with trips to Great Country Farms with Emma and Luke, Pumpkinville with Reagan's friend Carter and his brother Derek and Cox Farms for Johnny's work picnic.  The kids had a lot of fun on the slides, tractor rides and Reagan especially liked swinging from the rope swing!

Reagan also had her second horse show!  She rode in three classes: walk/halt, walk/trot, and an obstacle course.  She placed 4th, 3rd and 1st!  She was very excited and had a lot of fun especially since she rode in the same classes as her friend Sydney.  We were glad her pony Cupcake was a good boy!  We are convinced we sweetened the deal with the apples we brought him.

Monday, October 6, 2014

September - Neurology, Physiatry, Neuro Psychology

It has been a busy month!  In addition to starting school and getting a new brace it was time to go back to the neurologist, back to the physiatrist and back to the neuro psychologist.

Dr. Lavenstein was happy to see how well Reagan was doing.  He said her medication level is

sufficient for now and we should keep doing what we're doing.  We don't need to go back until March!

We also visited Dr. Morozova, Reagan's physiatrist.  Our big question was about the new SMO.  She agreed that the toe plate was too long so she asked that we go back to Nascott (the orthotist in DC) to have it trimmed back.  She also said we could have the sides shortened since Reagan doesn't really need the ankle support.  Although this is all great news…that means the new shoes we bought will now be too big.  It also means another visit to DC which is tough since Shawn is only there on Wednesdays and it is IMPOSSIBLE to get an appointment on his schedule.  Needless to say, she said she's not ready to eliminate the brace, but with how she looks now we may consider that when we come back to see her in February.  We also talked about constraint therapy.  She said research indicates this methodology is best for children who need to get their brain to realize they have an affected side.  Given Reagan is so high functioning now she thinks we really do need to consider a bi-manual program instead (intense therapy with two hands).  So off we go doing some research…

Reagan's private OT mentioned last week she feels Reagan has increased tone (tightness) in her left hand. So I also asked Dr. Morozova whether she thinks we should consider Botox again.  Although I am not a big fan of Botox (and having to put Reagan under anesthesia) we saw such amazing improvement in her supination that I wanted to see what her opinion is.  I was very happy to hear she doesn't think we should consider it for Reagan at this time.  It isn't uncommon to see increased tone during periods of growth spurts but the goal is to stretch regularly to try to counteract the effects.

Lastly, Cole had his 4 year neuro psych evaluation with Fairfax Neonatal Associates.  Although we had a private evaluation last year, this data is used for longitudinal studies that they do about premature babies born in the NICU. Overall the evaluation went well - it is about 4 hours so he is rather tired by the end.  But we look forward to comparing the results to the evaluation we did last year and seeing the areas where he's making progress.

In addition to keeping up with weekly OT, biweekly PT (for Reagan), doctor appointments and school we have gotten out to play a little.  We've been ATV/dirt biking a few times.  Reagan still loves her bike and riding the ATV with Dad.  The big breakthrough is that Cole is now riding the dirt bike and squealing WHOOO HOOO.  He doesn't have the strength to keep the throttle activated, but he's going slow enough that Dad can walk next to him and hold it.  And of course there's always the obligatory trip on the tractor to get a big smile.